Afternoon:
10°c
David Cameron will today vow to take on the "scandal" of public drunkenness and alcohol abuse that costs the NHS £2.7 billion a year
More...
The woman who woke up thinking she was French
Last updated at 23:37pm on 12.12.06
Louise Clarke is only one of 200 people in the world to develop Susac's Syndrome
She lives in Bristol and works in Bath. But Louise Clarke became convinced she was French.
A rare brain disorder left the 30-year-old recruitment consultant believing she was living in Paris.
She started speaking French all the time, rang her friends to invite them to stay in the French capital - and asked to eat croissants.
She was also plagued by migraines and hallucinations and ended up so confused that her worried family took her to hospital.
After months of tests, she became one of only 200 people in the world to be diagnosed with Susac's Syndrome.
The disorder is thought to be brought on by stress and affects the brain, ears and eyes, mainly among young women. In Miss Clarke's case, it appears to have brought back memories from when she was living in France four years ago and confused them with the present.
"It might sound funny to others, but suddenly thinking you are French is terrifying," she said.
In October 2004, she began to become confused, disorientated and suffered cloudy vision. "It started with migraines and hallucinations," she said. "I eventually got so confused that my sister took me to A&E.
"I was gabbling away in French in my hospital bed. It was a really tough time for my family.
"At one point, my sister discovered I had phoned all my friends and told them to come and visit me in Paris. She had to ring them all back to explain what had happened." Miss Clarke also thought she was in Vietnam, a country she had visited a few months before she became ill.
She spent three months at the Royal United Hospital in Bath while doctors carried out test after test. She was eventually diagnosed with Susac's syndrome. It is thought to be an autoimmune condition, which means the symptoms result from the immune system attacking healthy tissue.
Typically, it causes alterations in the brain, leading to memory problems, behaviour changes and an inability to concentrate.
As Miss Clarke's case shows, it can also make the sufferer think they are living in a memory of something they experienced months or years earlier.
Miss Clarke, who still has the syndrome, is able to control it with steroids and other medication but has been told it can last up to five years.
Professor Michael Hahn, an American expert who has investigated the syndrome, said Miss Clarke was not alone in suffering such bizarre symptoms.
"I've studied around 40 cases and a fair percentage reported the confusion of believing they were in a foreign country or place they had visited," he said.
•Susac's Syndrome is named after Dr John Susac, who first spotted the problem in 1975. Sufferers often experience a personality change and develop bizarre and paranoid behaviour. Their speech can be affected, and many experience unrelenting and intense headaches and migraines, some form of hearing loss, and impaired vision. The problem usually corrects itself, but this can take up to five years.
Reader views (17)
My 19 year old daughter has just been diagnosed with this syndrome,it took her neurologist 12 days to confirm,my poor girl seems to have lost the memories of the last 2 to 3 years,she was convinced she was in Great Yarmouth(My oarents used to take her there as a child)Only when i brought her home for a few hours this weekend has it finally sunk in that we are in Coventry.
She too has problems with her hearing,eyesight & balance but the most worrying thing is her personality change & she seems to be detached from reality,i have had to bath her & wash her hair because she cant do it herself.
Please does anyone know of any support in the UK for this horrible disease,I need to know how to live with it & how to help her come to terms with it,she held down a full time job up until the beginning of December & i cant foresee her returning.
- Tracey Lydon, Coventry,West Midlands.UK, 12/02/2012 22:24
Report abuse
My sister was sick with vertigo, vomiting, unable to walk or function, in another world, from mid Oct - Dec on a downward spiral. She had a MRI e Dec 16 we were told MS, lymphoma, and multiple white matter signals??? took her to her dr Dec 21, requested an emergency appointment with a neurologist in Kingston, two days she was worse, we drove to Kingston told emergency we thought she had a stroke and they let us see a Dr, they admitted that day, Feb she was diagnosed with Susacs, she is on a high dosage of IVGV and cyclophosphmide, she has been transferred back to Cobourg, is getting physio to walk, and occupational theraphy, they advised us that they want to discharge her Mar 30. She lives on her own, is 57, how do they think she can look after herself? she has an income of 350.00 per month pension, she was self employed on a business inititive program started her own business July1, her friends have been operating as she has a lease so she won't go further in dept, this business is young and cannot provide an income its still in the red, it takes 6-12 months to get a disability pension, she would have know idea how to cook, clean, or do laundry she just learned how to dress herself and change her depends as she has no bladder control as yet....she has myself and brother that have been helping but we are in no way equipped to take her or financially able, when I read the length of treatment where do you get help to pay for this.
- Wendy Chaput, Pembroke On, 22/03/2010 19:46
Report abuse
My daughter (29yrs) has been suffering from Susacs disease for the past 16 months, on admission she had encephalopathy following a month of vomiting. Initially diagnosed as MS but reviewed following hearing loss and then shortly after lost the sight in one eye. Fortunately this was restored with IV steroids. During the course of thiis devastatiing illness she was given IV steroids many times. In between she would improve only to deteriate again. When I say deteriorate I am not kidding. She was at one stage unable to walk (paralysed in one leg, weakness in one arm very similar to a stroke) she was confused, vomiting lasting for days, unable to turn her head so in danger of aspirating. Unable to talk or talking gibberish, problems with swallowing and more. Since diagnosed she has been on high dose steroids, cellcept. IVIG 3 weekly and now on reducing dose steroids hoping the cellcept will take over. She has many cognitive issues but has shown much, intensive therapy to try and enable her to walk unassisted but has a long way to go. We also live in hope that this disease will resolve itsef as some others have done.
- Marilyn, Queensland Australia, 19/03/2010 02:51
Report abuse
My daughter, now 26, was diagnosed with Susac's 3 1/2 yrs ago. It has been extremely confusing for all of us... especially my daughter. She was going to school at the time, rooming with her sister and friends with her brother close by. They literally thought she was seeking attention as her personality change reverted to childhood and she would talk like a child. She was having massive migraines along with severe depression. Late one night a friend brought her home (a 5 hour drive) and we began seeking medical help.Her balance was impaired and she began falling, her legs were like rubber at times. The neurologist thought she might have MS but an emergency appt with an ophthalmologist presented occlusions in the retinal artery and she was sent to the U of U Moran Eye Center where she was diagnosed with Susac's. She had all the typical symptoms with low constant rumbling in her ears, vision blockage, and migraines. Almost a year ago, just prior to finishing a 2 yr regimen of chemo, IVIG, and steriords, my daughter relapsed and started all over again with a different chemo drug, IVIG, larger doses of predisone, along with medications for her headaches. Her depression continues and at times is increased partly due to extreme weight gain from her prednisone. Along with the chemo they have also started her on cellcept. Life is a mass confusion for her and she would prefer at times not to have one, but she continues to push forward in hopes that this will all be over soon.
- Lynette, St George, UT,USA, 22/02/2010 19:40
Report abuse
My wife Karen, has been diagnosed with Susac's, and is now undergoing treatment with steroids ( prednisone ). She is 51. I believe she has had this disorder for awhile (maybe 3 years), and it only started to flourish in her brain this summer. She has gone through a pretty dramatic personality change in the last three years, suffered from migraines, and finally in June, started having bouts with vertigo and falling, hearing loss, memory loss, facial numbness, seeing "lights", all the classic symptoms. She was rendered nearly helpless by this demon about 6 weeks ago on Labor Day weekend. We got her to the hospital on Sept 9th and it took our medical team led by an Indpls neurologist, Dr David Josephson, about two weeks to confirm Susac's was it. I am hoping that she'll at least be able to make a complete physical recovery, and return to her job and the new life she had started to live without me. Our marriage looks to be a casualty of the personality change.
- Fred Yde, Carmel Indiana, 26/10/2009 14:27
Report abuse
I had a hearing loss on May 31st 2009. Brain MR showed encephalopathy and I went to hospital. I was told there about Susac's syndrome. Then I walk with vertigo and cannot drive at all. Sometimes I needed somewhere to hold to walk. Walking is better now.
- George Makris, Athens Greece, 06/09/2009 21:06
Report abuse
My mother was diagnosed with Susac's disease 6 years ago and she has never been fully treated for the disease. She has mainly been treated for the separate issues such as acute/full hearing loss, cataracts, bleeding of the iris, tinnitus and resulting depression.
If anyone knows of a specialist in Australia to discuss this with further, I would really appreciate your assistance.
Regards
- Karli Slavik, Australia, Sydney, 22/04/2009 06:25
Report abuse
Hi, my daughter (now 27)was diagnosed with Susac's three and a half year ago.
Along with migraines, hearing loss and eye problems none of that compares to the emotional and psychological traumas she has gone through.
She has been through physchological tests and they say she is emotionally at the 5th grade level. The memory loss, dementia and confusion is so hard to manage.
Mayo Clinic in Rochester MN is doing a research study on the syndrome.
My daughter was lucky enough to be included in this but even with the best medical care in the world they can't guarantee full recovery.
Her physiological therapists and occupational therapist are the best, they have been counselling her for a year now but she still has a long way to go. She had a relapse 2 1/2 years after being diagnosed initially. She has been on the same regimine, steroids, aspirin, ibuprofen, IVIG and now since her relapse she is on cellcept for another year.
There is a Partnership Class available at the Mayo Clinic free of charge to the parents or caretakers of patients with brain changes or damage to learn more about how the brain works and what happens to patients when they have these emotionally challenging diseases.
There will specialists there to answer questions and help caretakers to come up with ways in which to deal with behaviours.
I should mention that we waited to give her the cochlear implants and her hearing came back fully, unlike a few other patients we know of.
- Marie Rivard, Mpls MN USA, 29/08/2008 01:33
Report abuse
A friend of mine also has this syndrome. It was only very recently diagnosed, but it was such a relief when it was. Friends and family were all very confused and couldn't understand what was happening to him. I will withhold his name as he finds it quite embarrassing, but we are now able to understand what he is going through. In fact, we are going through it with him, and it has bought us closer together. We look forward to the day when he can regain some sense of normality, but until then, we will be there for him. I like to look on the bright side, and see it as a good opportunity to practise my French.
- Janet Thissoulis, Faliraki, Rhodes, 21/07/2008 21:10
Report abuse
My mum was diagnosed with this disease when I was 2 or 3 years old. If anybody knows how to get in touch with this Dr. John Susac please tell me, nobody will ever answer any of my questions and I would really like to know about this, she's my mum and I don't have any clue what's wrong with her.
- Daria Dibono, Carmel, NY, 09/05/2008 14:10
Report abuse
My best friend has been diagnosed with Susac's. At UCI hospital she was given IV Steroids. After a few she seamed a little better. Now it seems after no steroid treatment for a week the symptoms are returning rapidly. We are desperate to find some help for her.
- Sandra, Garden Grove, CA; USA, 13/12/2007 02:24
Report abuse
Our 18 year old daughter was recently diagnosed with Susac Syndrome. I feel like I have been in a fog since this whole thing started. Now we are preparing for treatments and I am terrified! I hope we are doing the best for her. What kind of support is out there for this? I got to speak to Dr. Susac and I heard all the clinical things now I would like to hear from the families and patients themselves. What kind of life do you have after treatments? How do you cope with all this? How is life like living with Susac Syndrome? I feel so scared...
- Lisa, Palmdale, CA USA, 27/03/2007 06:32
Report abuse
My 19 year old niece has just been diagnosed with Susac's and is in the acute stage with IVIG infusions and high steroid doses. If there is any kind of support group for families of these patients, please notify me. My family is terrified.
- Karen, Naples FL USA, 14/02/2007 15:05
Report abuse
Quel dommage! Bon sante, madame.
French is a beautiful language, that is why I studied it in school. I hope the US and France can once again become close friends. . .it could happen. And, as I say above I hope your wife has her health return.
Chris
- Chris, Valley Village, CA; USA, 13/12/2006 23:56
Report abuse
Terror at feeling one is French doesn't strike me as a malady. She sounds perfectly normal in that respect.
- Alan, New York, USA, 13/12/2006 22:11
Report abuse
Really interesting!
Recently, november 2006, my wife, who's French, had an ischemic brain stroke. When she woke up she started to speak English and beleived she was still in Canada (We lived there 15 years ago)... nothing to do with the Susac's Syndrome. She is recovering quite well but still use some English words when she doesn't succeed to find the French ones.
- Jpll, France, 13/12/2006 13:41
Report abuse
Poor thing!
- Jay, London, 13/12/2006 12:07
Report abuse
